Friday, March 3, 2017

Mom sleeps most of the time and eats and drinks very little. When we do have her on the potty and she is sitting up, Rob takes the opportunity to give her something to drink. Mom can no longer sip through a straw, or at least not all of the time. So he starts by giving mom a spoonful of water to prime her for drinking.

Mom still calls. Sometimes for her sister Marge, sometimes for her mother. But mom sleeps most of the time and we have taken to propping her legs and back and heels with pillows to prevent bedsores. All in all, mom is still fairly happy and seems to be comfortable. She is not eating more than a quarter cup to one-third of a cup of cereal a day, and getting her to drink can be challenging. Consequently, mom is getting smaller and smaller. So frail. Had mom been in a nursing home, she would have been long gone.

Sometimes I think of Brooke Astor and how all the money in the world was no guarantee of comfort or a good end. That Mrs. Astor laid untended in her urine on one of her silk damask couches is unthinkable.

The end is never an easy time. You truly learn to live in the moment. Yesterday, I was quizzed by the social worker and the current chaplain about how I will feel when mom passes. I protested saying that she is still alive. We are making plans and doing things dispassionately as needed, but to know how it will feel when my mother is gone is useless conjecture. I despise when the news hens on TV ask “What if?” Who knows and frankly who cares about what might be. I will know of the grief of my loss when it occurs, and then and only then will I deal with it.

So to all the nurse assistants, nurses, doctors, and chaplains, who ostensibly try to help you through these wrenching times, buzz off! Mom is still here and we are still caring for her in many ways. We will heal in our own time and in our own way. No amount of your talking about mom’s passing will help us while she is still alive. We cherish this moment: the moment that mom still needs our help, our presence, and our love.

Thursday, February 9, 2017

Mom fell again on Tuesday evening. This time, she hurt her leg or her hip. After a call to the hospice nurse, we felt it best to have her taken to the ER by ambulance. And so we did. It was difficult to assess how much pain mom was feeling and where, apart from her leg.

The ER is a horrible place to spend the night. I sat on a hard chair through the night or paced the room, my little black jacket the only thing between any semblance of warmth and death by freezing. I had hours to inspect every corner of that confined space with my eyes. Mom did her usual, calling out for Mom and Mary and Marge and nurse and wanting to go home.

An x-ray revealed that her hip was quite thin. No news there. No fracture, possibly, but then, it is difficult to see hairline fractures. What was clear was mom’s bowel impaction. Despite senna twice daily, glycerin suppositories, and some prunes when she will take them and liquids—how difficult it is to get her to drink anything—mom has always been constipated. At this age, however, it becomes a serious danger.

The doctor tried several tricks in the book: enema, IV fluids, a glycerin suppository, and a second enema with molasses. Eventually, her bowel loosened. After the cleanup, it was time to send mom home, where the rest of the cleanup would fall on me.

We spent nearly 12 hours in the ER. I arrived home at 7:00 AM, took Valentino for a walk on his birthday (February 8), fed him, fed myself, and waited for the ambulance to bring mom home. Today, the nurse and our aid came to visit. I prepared mom’s room for a lengthy (permanent?) stay: bars up on the side of the bed; portable potty, cleaning bucket, wet and dry wipes, and gloves nearby; and a bed tray for meals.

Now all of the cleaning up will take place in one room, and the bathroom will be free for Rob and me. After stocking mom’s room, I cleaned the bathroom (nonstop work), but this time for Rob and me. I put out our towels without fear they would be soiled with feces. I even put our toilet paper on the stainless Italian holder I bought when mom first arrived here. I remember thinking how it would keep the toilet paper clean, as it covered the paper with a stainless flap. I was unable to use it because mom would soil the holder badly.

All personal items had been hidden: toothbrushes (even Valentino’s) and toothpaste, brushes, and files for fear mom would use or soil them. Now, there will be no such problem, but sadly, mom is confined to her bed, until Rob or I can walk her the few steps to the potty in her room. One newer problem has arisen: my shoulder pain. I am concerned that I have torn or am beginning to tear my shoulder. Mom is dead weight and I am not sure how long I will even be useful in this endeavor.

Mom just called, “Mary, Mary.” Time for a potty break.

Later—

After removing mom’s diaper and cleaning her with warm, soapy water, I managed to bring her to the potty, a few steps away, doing this with my good arm.

Cleanup took a while. There was the diaper, removing it, cleaning mom (a heroic endeavor), emptying the potty in the toilet, and cleaning it in the basement. Then cleaning the potty with disinfectant, lighting the soy aromatherapy candle, and depositing a drop or two of essential oil in the potty. Today, our first and very welcome snowstorm precludes my quickly depositing the soiled bag with diaper and wipes outside. I am not sure when or if Thursday garbage pickup will occur. But I will get dressed and trek to the curb.

It is sad that mom is now limited to her room until or when or if her leg heals. But did I say something about cleanup being easier?

Monday, February 6, 2017

Mom has been in rare form since yesterday when she saw “a man” in her room. While “he” was in the room, I heard her say, “Cheryl. Cheryl is her name.” Then she called me and asked if Cheryl was the name of my friend. I told her that it was. Later, we agreed that Cheryl’s dad, who has just passed, was visiting mom, as he knew that she, living between two worlds, could see him. He might have mentioned that Cheryl was my friend. It was a way to confirm that it was he who was visiting.

Today, more of the same in a different vein. At the moment, mom is screaming endlessly for me. She is worried that “Sandy is alone!” Unfortunately, I cannot convince her that I am Sandy. It’s funny and maddening at the same time. I am trying to work in my office above her constant, loud, and sometimes shrill calls for “Sandy.” When I tell her that I am Sandy, she will not believe it. She is now shouting, “I need to pick up my kid. You can’t do that. I never leave her alone.”

I know it must be painful to be locked in her world, fearing the worst or whatever is going on in her head. She thinks I am lying about being Sandy. She really has no idea who I am. But she did say, “They should be grateful they have blankets and shoes and socks.” Indeed, we are grateful. And this is something I say in thanks every night: “Thank you for the pillow under my head, my blankets, my warm clothing…” I know there are no guarantees in this life. And for mom, there are precious few in her mind.

Mom is now shouting endlessly for Rob, having given up on me and my insistence that I am Sandy. We are reluctant to give her Ativan, as she falls and becomes unstable when given such meds. What to do? What to do?

I am so sorry for my mother. I am sorry for her anxiety, and yet I know it’s all a part of dementia. What a hell this is—for her and us! There are no answers, no solutions. Mom is calling me/Sandy constantly, without stop, without stop.

February 5, 2017

Mom is seeing people who aren’t there. She’s been shouting all morning. There is no “guy” in her room, but she is now shouting for the cops, for Rob, for me. I tried holding up a sign earlier on which I had typed, “PLEASE BE QUIET. ROB IS SLEEPING” to little avail. Eventually, Rob awoke.

Rob says, There is no guy!

Mom says, Well, who is he?

Me, There is no one here!

Mom persists, Please Rob help me. How did he ever get into this house. Could you tell him to go.

We have done our best. But it’s not working. I am tired. My temper is short. This is really why we need outside help. Caregivers need perspective. We need to be drawn back. We need to be calmed down. We need to be reassured. We need time to heal.

Mom needs assurance, too. And I am not in the position to give it to her when I am exhausted and frustrated.

If the only recourse is the nursing home for respite care, it’s a mighty poor recourse. The last place we went to was dark, dank, and not very clean. Mom’s roommate was a morbidly obese woman who stank to high heaven. She was only 50 years old and had been in nursing care since she was 39. When I searched for mom’s shoes last time I was preparing to take her home, I found them under her bed on a floor that had not been cleaned in ages, if ever. The bathroom in their so-called suite was filthy. The toilet seat was caked with feces. And two of mom’s nightgowns were missing. I assume her cries to go to the toilet were unheeded and her clothes became too badly soiled.

So there is no recourse at this end of the short stick. Even the most expensive nursing home has its limits. The best are good only until you actually need care. For those who can afford one of the so-called “top-drawer” homes, you are provided transportation to concerts and other events, Zumba and yoga classes, financial advisors, hairdressers, barbers—you name it. But when medical care or personal care is required, all bets are off. They are all woefully understaffed. Here in my home, there are two of us who care for mom, plus a variety of assorted CNAs, LPNs, and RNs who pop in from time to time. And still, this is difficult. So I cannot fault the institutions that purport to offer care.

Where dementia is concerned: Abandon hope all ye who enter here!

Tuesday, January 11, 2017

Sometimes I think I should stop writing. There is nothing new to say. And when I think I have mastered my emotions over this entire mess, I prove myself wrong.

Every diaper change has been a challenge, but I had remained ahead of the game by anticipating mom’s trips to the toilet, where I could clean her myself. Last night, I lost. Valentino had me up at 0220 to romp in the yard. Mom’s hours have disconcerted him, too. And when I finally heard mom call, I ran downstairs to find her asleep. This often happens, but only moments later, she will arise and walk to the bathroom. She did this morning around 0400. Alone.

When I arose two hours later to take Val for his real walk, I had to first clean the bathroom. No need to describe the scene. I examined mom in her bed. No diaper, of course. So I lifted her little body and put one of those tabbed affairs on her to prevent the dried poop from flaking off onto the floors. I let mom sleep for a while then marched her to the shower. Just as I was drying her down, she pooped in the tub.

Now, I think I reacted pretty much the way any mother would whose child did the same. I put her on the toilet and said, “Now, sit there until you poop in the toilet. All week I have been cleaning you up and pitching soiled diapers. Sit there until you poop and you’re not getting up until you do!” After 5 days of cleaning filled diapers, she did. Finally!

Mom is now in the kitchen. She is temporarily clean and smells good. It won’t last. I will pull her diaper back throughout the day to check it. Too often, it will require changing. This is the child I never had with one huge exception. She will never grow up. She will grow worse and then she will die.

Don’t ask me what the lesson is. Not today. I don’t care. Not tomorrow. I won’t care then either. If I live long enough, I might figure something out in 10 or 20 years. Who knows? Mom is my “sewa,” my mission, my responsibility. I accept it. I do it because I must. That’s all. There is no reward for this and there will never be—until it is over. The lingering “reward” might be a guilty conscience for the times I lost my temper or a yearning to redo a moment more sweetly. But the truth is, this is life. It’s fluid. It’s tough. It’s fraught with complications. It doesn’t get easier. And it won’t be any easier when her life has ended. Cleaner, perhaps. But not easier.

Monday, November 20, 2016

Imagine being in a state of perpetual bewilderment. This is what I think mom is experiencing. She is pretty graceful about it on the whole. The worst part is that she calls one or the other of us constantly during the day and night. We agreed that cleaning up poop is something we have learned to manage, but answering her constant demands is far more difficult to take.

Imagine still, that you ask a question, it is answered, and you immediately forget what you asked or that you asked it or that you received an answer to it. You smile, you ask again, only to be told that your question was just answered. Repeat this scenario a dozen, no 5 dozen times, and you have a day in the life of a person with severe dementia, or severe memory loss. It must be bewildering, frightening on some level (if you remembered enough that you had forgotten anything at all or that you ever asked the same question over and over or that you had ever received an answer, let alone many answers).

It’s exhausting for me and exhausting for Rob and annoying. How to prevent it from becoming annoying is anyone’s guess. When I try explaining to my mother that I already gave her an answer or already told her what she asked, she smiles and says, “Oh. I didn’t know.” And then she proceeds to ask her question again.

Is there a solution? I don’t know. All the memory drugs in the world cannot make a difference to mom. For us, perhaps earplugs or an office many doors away from her room. But she shouts. She knows how to be heard. Like a child, she is unrelenting and stops only when she has been satisfied, which all too often last only a very brief time.

For those who would recommend coloring, magazines, word search puzzles, television, she is long past most of this, most of the time. There is no solution, save one. And that is a sad one. No matter how annoying mom is right now, we will miss her when she is gone, but we won’t miss the constant interruptions and demands. This is an imperfect world filled with imperfect people and scenarios. I am reminded daily of the Nathaniel Hawthorne short story “The Birth-Mark.” In it, the beautiful Georgiana, who is physically perfect in all ways but for a hand-shaped birthmark on her face, is about to be married. When married, her husband, Aylmer, cannot abide the birthmark and devises a way to eliminate it. Eliminate he does and in the process, kills his wife. When the birthmark is completely eliminated, she dies. The removal of this one flaw killed her. For the high school me, the story was about man’s inability to be perfect while on earth. For the husband in this story, there were more complicated issues related to imperfection and fatal flaws. The initial fatal flaw turns out to be the lovely Geogiana’s agreement to allow her husband to experiment on removing the birthmark from her face.

There is nothing perfect on earth. There are no perfect people on earth. There are no perfect scenarios or solutions on earth. There is no perfect caregiving. Even the pursuit of perfection has at its core a serious flaw: it cannot be achieved.

So if my mother is imperfect and cannot be set right, my reaction to her constant demands—frustration—will also be imperfect. We are not to blame however hard we try to right this scenario. Aylmer lost everything to learn this lesson.

Friday, November 4, 2016

One of those mornings. Mom needed to use the potty and called for help, when she is perfectly capable of taking herself to the bathroom and does so throughout most of the night and all day. Valentino alerted me to mom’s calls. Rob needed no such wake up. We have long been up. Mom will enjoy plenty of rest today, sleeping while we work. It’s exhausting. Don’t let anyone tell you that caregiving is rewarding in any sense of the word. The rewards are all for those who are being cared for. Most of mom’s needs are seen to, which is more than she would ever receive in a nursing home. My reward comes merely from knowing that mom is clean, decently fed (as much as she allows), and has a comfortable bed and home. The rest is up for grabs.

Monday, October 24, 2016

I spent the morning running errands while Rob stayed at home with mom. Fortunately, Val was at the groomer’s. So there was one less creature to tend to. While I was at the car dealership waiting for state inspection on Greta Carbo, Rob called. He was exasperated.

Rob: Your mother wants to know where her ring is. She said she was wearing it this morning.

Me: Nonsense, Rob. Mom hasn’t worn a ring in ages. Look at her fingers. Besides, she gave her wedding ring to Marcy at least 6 years ago.

Rob: Talk to her.

Me: Hello mom.

Mom: I don’t know where they are. My rings are missing. I was wearing them this morning.

Me: No you weren’t mom. You gave them to Marcy years ago.

Mom: Will you help me look for them. I can’t find them.

Me: Ok mom. I know where they are. I put them away for safe-keeping. Let me talk to Rob.

Problem solved, Rob. You can’t tell her the truth. She doesn’t understand it. She knows only what she is currently fixated on. Don’t try to explain. See you later.

By the time I got home, mom had completely forgotten about the ring. She’s sitting on the couch now, singing away, wrong words and all. This will go on for quite a while. Fortunately, I can retreat onto the back porch. Pains me that I will lose the use of the porch in the cold weather, but for now, all is ok.

Sunday, October 9, 2016

I have not written in a while. I has become painful to recap the day and record mom’s decline—or as the aides over at Hearthstone say, “she’s sliding.” Mom hasn’t been to Hearthstone in quite a while, her dementia is too far advanced for them. Only today, I saw a woman there whom I had not seen in 2 months. She had been relatively healthy and even somewhat feisty. But I was dismayed when today she said she had to leave my prayer gathering because “My husband is going to pick me up.” Of course, her husband is long gone and now she is “going” or “sliding.” I spoke to an aide briefly about it. Apparently, this woman gets worse after breakfast and as the day wears on. Life eventually wears us all down to varying degrees. I just wrote to my uncle and tried to assure him that we would not go to way of the rest of our family members. His brother and two sisters suffered dementia, and now mom has joined them.

Meanwhile, I continue to study music, Japanese, and Italian. Is it possible continued study will help avert or delay something so heinous as dementia? Or is mental decline inevitable? Doesn’t seem to be for everybody. But then, who can know it? Better not dwell on it, better to spend my time studying, reading, enjoying life while I can.

All this time, mom keeps calling me.

Did I wash my face?

Yes, you did. Twice already.

When are we leaving?

We aren’t.

Oh.

Sandy! Marge! Sandy! Do I have to wash my face?

No, you did already.

Oh. When are we leaving?

We aren’t leaving.

Where are going?
Nowhere. We are staying home. Would you like to go for a walk?

No.

Would you like to visit Betty?

No.

Would you like to go to a movie?
No. I’ll stay here.

 Sandy! Sandy! Sandy! Do I have to wash my face?…

 It’s a lot easier to deal with someone other than a relative or with someone whom you can leave at the end of the day or your shift.

Years ago, Jerry, one of my yoga students, came over to pray for his two aunts, who had just died. We had suspected foul play, as his cousin was caring for the aunts. The cousin was a drug abuser, as was her boyfriend. It is likely that the aunts drove the cousin crazy with questions, requests, or whatever. Both were victims of dementia. The cousin, however, was hardly in a position to deal with them with equanimity given her condition and theirs. These days, I am less inclined to believe ill of the cousin, despite her drug addiction. Dementia is difficult to deal with on a 24-hour basis, even if you are living a relatively healthful life.

Right now, I am going to walk my pup down by the river. I have had enough of Sandy, do I need to wash my face? Sandy, where are we going? Sandy, when are they coming? I need fresh air and sanity. So does my pup!

It all started night before last, when Rob fell. He was coming home late from the supermarket, carrying a bag of ice for mom (our refrigerator no longer makes ice) and some groceries. It was a moonless night and he managed to trip on a manhole cover. I didn’t know about the fall until the next morning. When I learned of it, I changed all appointments, made a doctor’s appointment for Rob, and found a sitter for mom. We made a few side trips to other markets while we had the chance and the sitter. But this is only the beginning of the saga.

I took Val for a walk yesterday in the searing heat. He seemed to want to go the long way, so we did, limiting as much of our walk as possible to the protection of the shade trees and grassy lawns. But with this heat, most grass in our neighborhood is like dried wheat. Val was apparently not feeling well and vomited twice. When I returned home, I found more evidence of his illness and called Stanley Steemer. What pet owner can do without them? Through the night, he managed to vomit twice more. I tried to clean with a little vinegar and water, but the affected carpet is woolen and more than 100 years old. Still, it was worth the effort. No serious damage done.

And mom has been doing her fugue.

I like your shirt? Where did you get it?

At the store, mom.

Where’s Rob? Is he still sleeping? He sleeps a lot.

No, it’s 3:40 in the afternoon. He’s upstairs.

Where did you get your shirt? I like the colors.

Thank you.

Where’s Rob? Is he still sleeping?

No. He’s not.

Is it cold outside?

No, it’s nearly 95 degrees.

Where’s Rob? Is he still sleeping.

No, he’s upstairs.

Is it cold outside? I like your shirt.

And on and on and on and on… all in between calls from the workmen, the Stanley Steemer guys, and mom’s nurse. It’s a madhouse! It’s a zoo!

Busy day at the ranch. Jake and Rich came today to ensure that I would not have any woodchucks, raccoons, skunks, possums, or groundhogs under the new toolshed. The guys are in the process of building a critter barrier as I write. At the same time, the Stanley Steemer guys and mom’s nurse converged. We had a houseful, while Val was consigned to my office. Meanwhile, mom keeps calling for her amah to dress her for the club. It’s just one of those days. It’s hot, my plants are suffering, Val is suffering, mom thinks it’s the middle of winter, and I am tired. What started out as the most gorgeous spring has turned into a challenging summer. Nonetheless, I am ready. Besides the heat, the beetles have returned. I have distributed milky spore. Next year, they won’t be as prolific and the year after that they will be virtually gone. With any luck, better days loom ahead. Winter will surely come and I will be able to tell my mother that it is, indeed, cold outside.